Experiencing something personally, in real time, is very different than reading about it, talking about it or observing it.

I have yet another example of this from the death of my father in August.

My father was an extremely intelligent man with a Master’s degree in engineering and an M.B.A. from the Kellogg school of Business at Northwestern. His engineer training made his preparations for just about everything very thorough. When the early signs of dementia arose, he was quick to get the usual recommended documents updated.

I have read about the progression of dementia. I have talked about it and I have observed it in other families. My purpose today to emphasize to you that living through it is a whole other ballgame.

Our plan worked and from the outside it worked very well. Dad was active for the first couple of years. During the last few months, he had a couple of minor slips but never had an injury of real substance and he never injured anyone else. Other than his last five days, he stayed at home.

Financially, the elderly, particularly those with cognitive issues, are very vulnerable. They can make poor decisions and they are targets of fraudsters and scam artists. Dad spent money on things he didn’t need and there were plenty attempts to scam him but the financial damage was minimal.

These good outcomes were the result of good planning, good execution of the plan and some safeguards we used. At the core of this success was the estate planning documents, particularly the power of attorney and their trust. My parents are not well-to-do and have no tax issues to worry about. Their story is a wonderful example of how estate planning is about much more than taxes.

As Dad’s faculties declined, Mom used the POA to get the bank to tighten things up. He was responding to their offers of new credit card accounts, personal loans and home equity loans. She got the bank to stop that.  

As the disease worsened, his sleeping pattern got out of whack. He’d be up all-night watching infomercials and surfing the net. Things they didn’t need would arrive at the house. Sometimes he would argue that he did need an item but in time, he wouldn’t have any recollection of ordering things let alone why he placed the order.

Mom first lowered the credit limit on his cards so if he bought something unneeded, the amount to deal with would be less. Eventually, she had to shut down his credit cards completely.

In time, Mom also removed him as a co-trustee for their living trust. The trust document simply required a letter from two doctors to remove him as trustee. This kept him from being able to access the brokerage accounts, write checks or do any online banking. No court hearings, legal fuss or costs were necessary.

The non-financial documents worked well too. When my sister arrived at the hospice wing, she had an instantaneous and negative reaction to the news he was not being fed. Mind you, she knew he was not expected to live more than a few days and that there was no hope of recovery but she took the lack of nourishment as a cruel thing to do to Dad.

His living will was a huge help to her and the rest of us with respect to this matter. The document read, “…if I have a terminal condition; or I have an end-stage condition; or I am in a persistent vegetative state; and if my attending physician and another consulting physician have determined that there is no reasonable medical probability of my recovery from such condition, I direct that life prolonging procedures be withheld or withdrawn when the application of such procedures would serve only to prolong artificially the process of dying, and that I be permitted to die naturally with only the administration of medication or the performance of any medical procedure deemed necessary to provide me with comfort care or alleviate pain.”

The definitions of terms in the document were equally clear. In addition, was this sentence, “It is my intention that this declaration be honored by my family and physician as the final expression of my legal right to refuse medical or surgical treatment and to accept the consequences for such refusal.”

The document quickly turned my sister’s thinking from what was being “done to Dad” to “what did Dad want?” The statement of his intent and request for his family to honor his wishes transformed the whole matter into one that brought peace to my sister and all the rest of us.

That all probably sounds like many cases readers of this column have read about, talked about or observed over the years. The reality of how it all went down, however, isn’t nearly as tidy as the last few hundred words described it.

Those banking changes happened over time and at each stage, Mom had the same argument with the bank. They had been customers for 30 years. The personnel at the branch knew them and knew early on of Dad’s diagnosis. They were very nice but they also did not have the authority to accept the POA. Each attempted use of that document was met with an approval process that took far too long.

Now, I understand that institutions should not blindly accept the validity of such documents but the red tape was too much. The bank rightly was looking after Dad’s rights but they were also letting their CYA processes leave Mom vulnerable. Other institutions were easier to deal with. The POA is an important document but its usability will vary from place to place and clients need to be prepared for this.

I was not happy with some of the doctors we dealt with. They were all fine practitioners but they were also hesitant to put in writing that Dad should not drive or manage his finances. In Florida, you can tell the DMV about an incompetent driver and the DMV will look into it. One doctor said he would write the letter to the DMV. After two weeks, we learned from the umpteenth follow up call that the office manager had given up asking the doctor to sign it.

When we finally got ahold of him, he said upon reflection he couldn’t write the letter because he had not observed Dad driving. Fair enough but if that’s the case, tell us upfront so we don’t have to keep asking for a letter that is not coming.

Mom finally reported Dad to DMV herself. When he fell asleep during the interview with the DMV, the state rescinded his license. He still tried to drive. He even snuck out of the house when Mom went to take a shower. We eventually convinced Dad to “loan” the car to my nephew for the summer and the car never came back.

When it came time for the two letters to remove him as trustee, the first letter that arrived wasn’t from the physician. It was signed by a social worker. It stated that Dad was under the doctor’s care and that Dad shouldn’t manage his finances but it was not an attestation from the doctor. Heck the social worker didn’t even say the doctor said he was incompetent. It read as though that were her opinion. Cleaning that up took extra time.

With respect to his physical care, Dad wanted to stay at home as long as possible and Mom wanted him home too. The care plan was that as he declined, and we would increase the level of care accordingly. We had our sights on where he would go when it was too much for Mom. We knew what to do but assessing when to do it was difficult, even excruciating at times.

There was a period during which Dad was not so bad off that he needed to go into assisted living, but he was bad enough that part time home health wasn’t cutting it either. Home health got him bathed, groomed, fed and medicated, gave Mom some respite and help around the house, but he would be up all night. She would awaken every morning to some kind of mess. She worried constantly and didn’t sleep well.

Three things got us through our experience. We had the documents we needed, my sisters and I were willing and able to help out, and Mom had others that could physically help or provide emotional support.

My recommendation to any financial planner who has clients with a dementia/Alzheimer’s diagnosis is to talk with the caregivers in the household about these issues and help them connect with support services in their area. They are going to need them no matter how good the financial and estate planning may be.

Dan Moisand, CFP, has been featured as one of America’s top independent financial advisors by Financial Planning, Financial Advisor, Investment Advisor, Investment News, Journal of Financial Planning, Accounting Today, Research, Wealth Manager, and Worth magazines. He practices in Melbourne, Fla.  You can reach him at www.moisandfitzgerald.com.